I have always had stomach issues....ALWAYS. Even as a child I would tell my mom I had "icky burps." I would have problems with a mouth full of canker sores, no doctors could seem to understand why. They said it was a form of herpes and left it alone. I had horrible skin issues and rashes, again, no doctor could seem to figure it out. I was told it was a staph infection...good ol' hind sight is 20/20 - my Crohn's was talking to me even then.....I'm glad it waiting until after I had my children to really yell at me!
Fast forward....around 2003 I started having "accidents". Went to a GI - had an upper and lower scope, told me I had IBS with chronic diahrea, along with acid reflux. Sent me on my way. Never even saw the doc after my scopes. So, life went on. I actually got better - or so I thought. Got married, had a couple kids, things seemed fine.
Then.....I thought I'd get healthy, and quit smoking. Started eating cleaner. Was a work out junkie. Started having lots and lots of trips to the bathroom, and lots and lots of blood and mucus. BUT because of my previous lack of attention from my GI doc, and also with some "self diagnosis" on the internet, I saw that blood and mucus were normal parts of IBS - which I was already diagnosed with. Avoided seeing a doc about it. So for about 9 months I visisted the bathroom about 15 - 20 times a day. Then I had an annual exam with my doc, and was sent to see a new GI.
That was June 2010. He orginally thought it was UC. Then after my scope, biopsies, and blood work, he started mentioning Crohn's. He says I don't have the typcial pain that is associated with Crohn's (Thank GOD for that one!!) and that's why he was hesistant to say it was indeed Crohn's. But in fact my blood work now shows not only do I have Crohn's, he said my markers say I have a "very aggressive form." Whooo hooo lucky me! So we started my treatment as UC, and I was put on 3 1.2 mg tablets of Lialda. Things seemed to calm down. Then, my body got mad at me. I forgot to take my Lialda one morning....by noon I was bleeding and back on the toilet. After a week, things weren't calming back down so I called doc. Ended up in a horrible flare - my flares like to really show themselves in my eyes. Uvitis, what ever you want to call it - OUCHY OUCHY OUCHY!!! Was put on 40 mg prednisone the first week of Aug 2010. I'm still trying to taper off that evil drug. Every time I get down to 10 mg I start having problems again. I've had a few nasty full on flares since June, but have yet to find a real remission.
So, doc started me on Humira in October. I can't figure out if it's working or not. I know it can take some time. I however have lost my patience with prednisone and am officially weaning myself off of it even if I have to bleed in the bathroom 20 times a day again. I can't handle the mood swings or the weight gain. I'm up over 20 pounds!!! UGH. The Xanax is helping with the mood swings, but geesh, who wants to take more meds because of a different med??? I have to take meds to help me sleep too. UGH.
I started having pain in November. So after another round of tests and an endoscope, found out I have gastritis in my stomach and small intestine. I've been on 2 rounds of antibiotics for flu type illnesses (pretty sure they're related to the Humira, but who really knows right??) and the antibiotics have not taken care of the gastritis. I was supposed to have an appointment today with my GI to figure out our next plan of attack. Appt had to be cancelled b/c his offices computers were down and he couldn't get to any of my test results. Resceduling tomorrow. He's mentioned pairing Humira with Imuran a few times. I'm pretty sure that's where we are headed. However, I felt like I had the flu again today, 2 days after a shot - so it's really not looking like I'm handling the Humira???? I'm still randomly bleeding and have more pain and discomfort than I ever did pre-dx.
So now we wait....something has to work at some point right???
